childhood and adult nephrosis

[oriole12]

Hi,i am new here and i joined to maybe bring some clarity to having minimal change disease.I was first diagnosed when i was 6 years old,and had numerous relapses for the next 10+ years.I was disease free for the next 13 years and relapsed in my early 30s.The disease is a lot different as a adult,i relapsed 2 more times over the next 10 years.I am now 54 years old and all is well.If anyone has questions about childhood or adult nephritis,i would be happy to help.Good luck to all.

[Wizzi]

Hi Oriole12, which kind of nephrosis do you have? Are you at a stage of renal desease and if yes whivh one? Sorry for my english ....

[oriole12 in reply to Wizzi]

Hi Wizzi,i have or had minimal change disease.My last relapse was in 2004.Minimal change disease has no stages that i know of.

[Wizzi in reply to oriole12]

What's the different in childhood and adult disease? My son has 13 years old and he has a renal vasculitis now in remission and he's well now. I wonder how is to have a nephtitis on adult age. Thanks for your answer.

[oriole12 in reply to Wizzi]

As a child nephritis is problematic in many ways:edema is much worse,relapses seem to be more frequent,etc.As an adult(i relapsed at 30 yrs old)the disease is very manageable,as long as you respond to the Prednisone.The dose of steriods is much higher,the effects are more dramatic.

[Wizzi in reply to oriole12]

Thanks . Did Prednisone influence your height? There are no clear answers about the fact that you could lose some centimetres if you have to take prednisone fot long time in childhood. What is your experience? My son has stopped growing last year... and he's asking me what will happen. His doctor seems not to worrh about that

Have a jood evening

[oriole12 in reply to Wizzi]

I laughed when i read your post,my Dr told my mom and i when i was a preteen that i would probably not grow much.I am 6'2". The amounts of Prednisone that i took as a child were ridiculous.I was on a maintenance dose for years because of frequent relapses. The one thing i can say the doctors were correct about were bone and joint issues.I have never broken a bone but i have had numerous knee,back,neck and joint issues. I took predisone off and on for 11 years as a child,from 5-16.I would tell your son not to worry,i had a growth spurt after my 18th birthday.

[Wizzi in reply to oriole12]

Thanks, the story of my son is different. He had to take very high doses of cortisone for a few months and now it is 2.5 mg that could remain so forever, if the disease (which is a renal vasculitis) does not come back on. So he took a lot of cortisone for a year. I do not know what to expect compared to the consequences on growth that has now effectively stopped. The doctor says he will resume. I hope so much ... for him in the wolf's mouth and thank you very much for your help

[oriole12 in reply to Wizzi]

Good luck,love to your family.

[Shieldmaiden]

Thank you for your insight. It’s good to hear there’s light at the end of the tunnel. All I got from my kid’s doctors is he has a chronic kidney disease. They weren’t specific on which. He’s holding steady at around 20-25% function since it was discovered in September. Being so close to transplant numbers has me on edge all the time but the doctors said he could stay that way for the rest of his life. Or he may need a transplant in a month or a year or a few years. The waiting game is difficult.